Category Archives: school

Clinic Day #52 — a Colossal Mistake

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April 20, 2011

Of all the stupid mistakes to make. We went to clinic today for Tanner’s Final Spinal… only it wasn’t. There’s one more. But, somehow, I miscalculated the dates.

Wouldn’t be a huge deal except that Tanner has such anxiety about these LPs. So much so, that she actually had a pretty serious panic attack last night. She handled herself beautifully today, though. When we figured out the mistake I had made, she was initially upset, but forgave me quickly and we kept her very occupied with some new games downloaded to John’s iPad and Sara, the childlife specialist, who comes with us each time to help distract her and make things easier for her. Such wonderful people.

We celebrated my mistake with a cake that said, “Happy next to Final Spinal” on top. All you can do is try to make the best, right?

Tanner’s counts were down some… her neutraphils were at 780, which is neutropenic, but not severely so. Dr. Mixan felt like since we’re past flu and cold season, she could still go to school, but we’re a little nervous about that. She has off Friday and Monday anyway, so we will probably just keep her home tomorrow and hope she recovers some. We’ll go in for a counts check again next Wednesday to see if she’s come up any.

We found out some very sad news today. Both Tanner’s doctor and nurse are leaving. Dr. Mixan is a third year fellow and took a job in Chatanooga. He will be leaving in July and we will need to select another doctor to guide us through the rest of this journey. And, Cari, Tanner’s nurse who has been with us since the beginning of treatment, is changing jobs within the hospital. While we may see her from time to time, she will no longer be our regular nurse. We opted not to tell Tanner this today considering she was already anxious. This will be a big blow to Tanner. The bond between nurse and child in the clinic is really not to be underestimated. There is a real trust and love there and Cari had tears in her eyes when she told me she was leaving. Tanner will have a hard time with the transition and I hate that both of them are leaving at essentially the same time. We’ll let Cari tell her in her own way when we come in for counts next week and hopefully, we’ll bond with another nurse quickly, but both Cari and Dr. Mixan will very hard to replace.

Tanner will be on the Channel 5 news in the next few days. They were doing a segment on Eli, the three-legged therapy dog that visits the infusion room regularly. The kids love him and they interviewed my oh so shy child about having the dog in clinic. I’ll let you know when it is going to be on.

I’m going to bed now. Between the storms we had last night and the fact that Tanner and Jake were both in bed with me at some point last night, I got little to no sleep. And, clinic day with an LP is a long, exhausting day. So, I’m whipped.

Love,
Beth

Clinic Day #51

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April 13, 2011

We got to meet Champ at Medical Play!

We really didn’t expect Tanner’s counts to come up to 1,000 or above today. Generally, counts below 500 take a while to come back up so we were genuinely surprised when Tanner’s neutraphils came back at 1,040 today!!!

I told Tanner, we high-fived in celebration and then she immediately asked, “Can I make to school for recess?” Too funny.

We missed recess, but we did high-tail it back in time for her to spend the afternoon happily at school. At pick-up, she bounced to the car with a big smile on her face and asked if we could play outside when we got home… which we did.

We got to see one of Tanner’s all-time favorite nurses today, too! Blaire was Tanner’s ER nurse that first touch-and-go night when she was lifeflighted to Vanderbilt two years ago. Then, she happened to also be our nurse when we first heard in the ER that Tanner probably had leukemia. Traumatic situations make for tight bonds. Blaire is now a advanced practice nurse in the ER ICU, so we haven’t seen her in a while (thankfully). We loved seeing her; she still keeps up with Tanner through Tanner Time.

Tanner and Blaire in 2009

So that’s the good news… here’s the part that keeps me from celebrating too much, though. We started back at 50% chemo dosage today and go in next Wednesday for her monthly IV Vincristine and a lumbar puncture with methotrexate… her Final Spinal. No rest for weary bone marrow, I tell you. Makes me a little nervous to pile so much chemo on as soon as her counts recover, but this is how cancer treatment works. You don’t stop for much of anything. Call us cautiously optimistic.

Many of you have been asking about Sleeping Beauty tickets. They went on sale today. You can get tickets by calling the Boilerroom Theatre in Franklin at 615-794-7744. The shows are on Saturday, May 21 at 3 pm; Sunday, May 22 at 7 pm; and Monday, May 23 at 7 pm. The theater is tiny (holds about 120) so call quickly for tickets. You’ll want to arrive at the theater ½ hour before to get a good seat. I must ask, for fear that we might sell out the theater with Tanner fans and some poor parent might actually miss her kid in his premiere, for you to please consider one of the evening shows. The matinee is very popular with families.

Thanks to everyone for the good mojo!!!!

Love,
Beth

Counts Update

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April 6, 2011

Tanner’s counts finally came in late last night. Her neutraphils are 390, which is better than we feared, but still severely neutropenic. Dr. Mixan called this morning and her IgG level was also low (that’s an antibody associated with respiratory immunity). So, we’re headed to clinic this morning for an IVIG transfusion. We’ll also hold all chemo until next Wednesday when we’ll go in for a counts check and see where we are. No school and neutropenic precautions until her counts are back up.

Tanner slept really well last night and feels good this morning, although she is still coughing. The IVIG transfusion might help her kick the virus she is fighting so we’ll hope for the best.

Glad the waiting is over… I hate waiting. Thank you for all the prayers and good wishes.

Love,
Beth

Clinic Day #50 — unexpected

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Clinic Visit #50 – Unexpected

April 5, 2011

Tanner has been coughing for what seems like months. She does have a “habit cough,” which is just what it sounds like, a habit. But, she has also struggled with viruses or allergies or something that has caused congestion and extra coughing. She took antibiotics for two weeks last month for a sinus infection and we thought we had it licked, but this weekend, she started coughing again with a vengeance.

When she woke up yesterday morning, she wasn’t coughing and I thought maybe it had been allergies and sent her to school, but got an email from the teacher saying she had coughed all day and it didn’t sound like her regular cough.

We got up this morning, dropped Jake off at school and Tanner and I headed into clinic to check it out. When we got there, the doctor couldn’t see us until later in the afternoon, so we trekked back home and came back again later with Jake in tow.

Thankfully, her lungs and ears were clear, so they just suspect a virus of some kind, but when her counts came back, her total white cell count had dropped by 2/3 from just two weeks before and her hemoglobin was down lower than it has been in almost a year. The machine count did not pick up any neutraphils at all, which can either be a mistake or mean her neutraphils are wiped out. Neutraphils are the big infection fighting white cells and without them, you have no real immune system. They’re doing a hand count on her neutraphils and as of yet, haven’t gotten the results yet. So, we held her chemo tonight, just in case and have holed up in the house assuming the worst for now.

I checked Tanner’s lab results for the past year and half and her white cells haven’t been down to 1,000 in more than a year. When they were that low, her neutraphil count was 130… severely neutrapenic. So, it doesn’t look promising.

She hasn’t been neutrapenic in such a long time. We’re really lucky we’ve had such a good run, really. But, it does mean she can’t go to school or anywhere, really, until her counts go back up. No real contact with anyone unnecessarily. No fruits and vegetables that can’t be peeled. No fresh flowers in the house. There’s more, but I honestly can’t remember… it’s been that long. I’ll have to read my handbook from the hospital to be sure we’re not doing anything stupid.

Anyway, hopefully, the virus will pass without any other infection and her counts will come back up without the chemo to suppress them. But, it would not surprise me if she got a fever and we had to go back. Sigh.

I’ll post again tomorrow when we know for sure. Meanwhile, I’ll leave you with this parting photo of Tanner and Erin Stryker who was Tanner’s Wish Coordinator for our Make a Wish trip to Disney last year. Erin has become a dear friend and she never ceases to amaze me with her dedication to helping others. In addition to volunteering for Make-A-Wish, she also runs marathons for Team in Training, the LLS’ fundraiser. She came to the Light the Night Awards with us last week and the picture is of she and Tanner standing on the famous “circle” at the Grand Ole Opry, where the event was held. Tanner about fainted when we told her Taylor Swift had stood on that circle many times before. “What about Dolly Parton?” she asked, wide-eyed. “Yes, Dolly Parton too.” Priceless.

Love,
Beth

Clinic Day #48

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March 9, 2011

We were due at clinic this morning for a counts check, since Tanner’s chemo was raised two weeks ago. But, frankly, I think we would have gone in anyway; Tanner’s cold has gotten worse over the past few days. She’s been congested and coughing with no relief from allergy meds.

I hate expecting the worst, but I did. I packed some necessities quietly in my purse, just in case we ended up staying. I figured if Tanner’s counts were really bad, they might keep her, considering the cough and congestion.

Thankfully, I was worried for no reason. Her counts were perfect – 1320 – and they decided she has a sinus infection and gave us oral antibiotics to take. No IV antibiotics, no hospital stay… amen.

On the way home, Tanner was really stressed that we weren’t going to make it back in time for recess at school. She had also been really mad that morning because John and I told her she might not be able to go to school at all today. They were rollerskating in gym class and she did NOT want to miss that important educational opportunity! When we pulled up to our house to run in and get her backpack for school, I told her she had missed recess. She got really mad at me and it suddenly occurred to me… she blames me for lots of this. She BLAMES me.

Because I’m the one who delivers most of the bad news… “You can’t go to Spirit Night at Chuck E. Cheese because you might get sick.” “We need to go to the hospital this morning.” “You have to take this nasty medicine.” “I’m going to have to pull you out of school early… again.” As you can see, I’m a pretty easy target.

After I got back in the car with her backpack, we drove to school and I reminded her that I would be back in a couple of hours to take her to see Allison, the play therapist. Tanner has NOT been happy about seeing Allison lately. When she got out the car at school, she would not talk to me or say goodbye to me.

I got out the car and grabbed her shoulder to turn her to me. She resisted and I squatted down and held both of her arms so she had to face me.

“Do you know how much I love you?” I said. She shook her head. “I love you so much that I would 100 times rather have leukemia myself than to watch you have leukemia.”

Tanner’s eyes widened. I had her attention now. “I would do anything to take this away from you… but I can’t. There is nothing I can do to change the fact that you have leukemia. But you know what I can do?”

Tanner shook her head again.

“I can take the very best care of you that I can. I can take you to the hospital when you need to go, and I can keep you from doing something or going somewhere that might make you sick. I can make sure you take all of your medicine and that we go to see Allison so we get rid of all the bad feelings. This is all I can do; and I do it the best I can. I don’t make us have to go to the hospital or have to take medicine… leukemia does that. Does that make sense?”

“Yes,” she said with some little tears in the corners of her eyes.

“Tanner it hurts my feelings when you are mad at me for these things. I know they stink, but I’m just trying to take care of you. Can you try not to be so mad at me?”

My daughter put her arms around my neck and hugged me hard. She sniffed and said, “Hold my hand while we walk in, okay?”

By the time we got into the school office, she was bright eyed again and eager to get to P.E. for skating. And, when I picked her up just two hours later to go to Allison’s, she did not get mad at me… for the first time in months.

I’m learning that antidepressants don’t keep her from getting mad or frustrated or sad. But, they do make it easier to reason with her and for there to be a better outcome to the conversation. Three weeks ago, that conversation would not have been possible at all. Three weeks ago, Allison said that she saw a miserable little girl who had lost the ability to pull herself out of her unhappiness.

On the way home from Allison’s we saw the biggest and most beautiful rainbow I have ever seen. I told Tanner I thought it meant good luck to see such a huge rainbow. She thought maybe it meant she would stay healthy for Sleeping Beauty. I think maybe it meant there are brighter days ahead… we just have to hang on.

Love,
Beth

Better Days

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Things are looking brighter the last couple of days. After lying awake half the night on clinic day night worrying about the crazy amount of medicine that had put in my child in one day, and what the effects of that medicine would be, I woke to a very pleasant surprise… Tanner did not feel all that bad and… was pleasant. For the first time in months, she didn’t fight with me about getting ready for school… she actually smiled and said, “Okay, Mom.” Wow. Seems that anti-depressant works a lot faster than the doctors suspect.

After just three days on the anti-depressant, Tanner is a different child. John came downstairs on Friday night after putting her to bed and said with wonder, “She actually seems happy.” And right then we realized how much anxiety and fear and frustration and anger our poor child had been carrying around for quite some time. All the misbehavior (well, maybe not ALL of it) was really just misery. All the frantic, impulsive, over the top nuttiness was anxiety. I think her unhappiness happened so gradually, we just didn’t realize how bad it had gotten. It didn’t really look like unhappiness; it looked like combativeness. And, mercifully, it’s gone now, replaced with a peacefulness we haven’t seen in a long, long time.

Theoretically, it should only get better. She is on steroids and the extra chemo has set in and she doesn’t really feel all that great and even so, we see an improvement. Also, she is not even taking the full dose of the medicine; we will work our way up to that in a few weeks.

It makes me sad and happy at the same time. Sad to know how much all this has affected her and how heavy her burden has been. But, happy to know this is helping her regain her optimism and her true personality. It’s been a nice couple of days to hope for the best.

Then, today, another gift. Tanner auditioned last night for a part in Sleeping Beauty and today we found out she is going to be… wait for it… Sleeping Beauty (aka Briar Rose and Princess Aurora)!!!!! We couldn’t be prouder and she couldn’t be happier. We are so thankful to Act Too Players for believing in Tanner and giving her this chance. The play is in May… we’ll put out dates as soon as we know them.

Hope your weekend is as going as well as ours.

Love,
Beth

An Army for Hope

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February 2, 2011

I dropped Tanner off half-hour late to school yesterday knowing that she wouldn’t make it all day. The steroids had done her in, but I thought she had a couple of hours in her. As expected, she called me about noon and we picked up a movie and she spent the rest of the day on the sofa.

I didn’t think there was any way she would make it to the Leukemia and Lymphoma Society’s Man and Woman of the Year reception that evening, which was fine. It’s not mandatory that the Girl of the Year be there, but it’s nice for candidates and potential candidates to meet the kids who are inspiring them.

Tanner insisted on going (surprise, surprise) despite the fact that she didn’t feel very good and her legs were itchy (she has been having some kind of allergic issue or something).

The four of us arrived at Cabana in the pouring rain and spent a nice evening with some of the candidates and some potential candidates. We are so grateful to these soldiers of hope for a cure, some of whom have personal connections to the cause and some who don’t. It was good we came because Jack, the Boy of the Year, couldn’t make it and I think it meant a lot to people to meet Tanner. I was asked to tell our story and shared with them the extent of Tanner’s treatment and what she has been through. They were eager to learn and I’ve already made facebook friends with a few who wanted to know more.

I was asked to keep my comments brief, so I decided to tell our story in numbers – in doses to be more accurate. I went back to Tanner’s chemo roadmap in our 3-inch Vandy binder and counted up all the chemo she had received thus far. It took my breath away to see it listed that way. I wanted to share it with you as a testament to the toughness of my girl and of all the kids who endure this brutal treatment and more:

Tanner’s Story in Numbers

25 days inpatient in the hospital
8 ER visits
47 visits to the oncology clinic
3 blood transfusions
5 platelet transfusions
3 antibody transfusions
196 doses of dexamethasone (high dose steroids)
27 doses of IV Vincristine
482 doses of oral mercaptopurine
2 doses of Peg-Asparaginase via simultaneous injections to the thighs
8 doses of IV Cytabarine
1 dose of Cytabarine injected into the central nervous system via lumbar puncture
5 doses of IV methotrexate
15 doses of methotrexate injected into the central nervous system via lumbar puncture
56 doses of oral methotrexate
1 dose of IV cyclophosphamide
3 doses of doxorubicin
13 doses of oral thioguanine

This is, of course, only part of the story… the physical part. The emotional part can’t be put into numbers… it’s too complicated for that. And, Tanner’s numbers are really the best case scenario for a kid with leukemia. Boys would have a whole year more of chemo, and those who are standard or high risk or who have a more difficult to treat type of leukemia would endure much more than this.

It was good to remind myself of what she has been through… to remind myself that she has reason to act cranky sometimes or be angry or frustrated much more than the normal child. To marvel at how often she is not these things… how often she is happy, enthusiastic, excited and joyful.

Like today, for instance. I kept her home from school today. She didn’t feel great and there was some strep in her class that we wanted to avoid. She watched some TV this morning, then decided she would make some valentines for the kids who will be inpatient over Valentine’s day… her idea. She was so excited about it and got out paint, stickers, jewels and markers to decorate them with. She, Jake and I made nearly 30, and Tanner excitedly pulled out the last of her Halloween and Christmas candy and taped pieces to the valentines. She made a special one for Alli, the little 2-year-old who was on the ventilator and is now off, but still inpatient. We’re not due at clinic again until Feb. 23, so we’ll make a special trip in to deliver them. She wanted to go today!

We were so proud of her last night. Proud of how poised she was as adult after adult she didn’t know came to shake her hand. Proud of how she stood sweetly next to me while I read off the list of chemo she had endured, and of how she poked me with her elbow when I got a little teary and reminded me to buck up! Proud of her for just making it through with fierce determination to still find the good things in life. Proud of how her teacher said she did all the work asked of her yesterday at school even though she had to put her head down several times because she didn’t feel good. Proud of her for recognizing that it was important for her to be there last night even though it isn’t really a fun event for kids.

It was a great night to hope.

Love,
Beth

Clinic Day #44

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December 1, 2010

Tanner went in for her monthly clinic visit today to get Vincristine in her port. Her counts were high (too high, really) at 3,500. Dr. Mixan doesn’t know why, but per protocol, we will wait a few months to see if she comes back down before raising her chemo above 100%.

Tanner has been to clinic 5 times in the last month. During maintenance, we typically go once a month, but for counts checks, flu shot study and a fever, we happened to be there a lot last month. This morning, she just started to cry when I told her it was time to get dressed for clinic. I hugged her and told her I wished we didn’t have to go and helped her get dressed. We dropped Jake at Aunt Beth’s house and went to the hospital.

The clinic visit went very smoothly, but Tanner kept telling me the whole time that her stomach hurt and she didn’t think she could go back to school. Then, when I thought for a brief time she might make it back for recess, she rallied and was excited to go back. But, when we got in the car, I looked at the clock and there was no way to make it to recess. Tanner started yelling at me in this desperate voice, “Just drive really fast. Don’t stop for lunch. Just get me there… just GET ME THERE!”

I didn’t say a thing. What could I say? I knew it wasn’t just about recess. It was about missing things in general. Going to the hospital to get poked and get chemo while your brother spends a fun filled day at Aunt Beth’s house and your classmates get to go out for recess. Not for the first time, nor the only time. For the 60th or 70th time.

The car got very quiet and I could hear her sniffling in the back seat. I wanted to say something comforting, but I don’t know any more comforting words. I’m fresh out. “Don’t worry, we’ll just be doing this 20 more times or so for 9 more months and
THEN we’ll be done.” Yes, that would be cheerful.

Then, she told me she was sorry she yelled at me and asked me how much longer she would have to do this. “Nine months,” I said, quietly. She just began to cry and said, “I wish I was someone else.”

Again, no words of comfort. She had given up and so had I. It’s just too long sometimes. Too much behind us and too much ahead. She’s doing so well and I know I should be grateful, but I don’t feel that way lately. I just feel tired and ready to not worry about all of this.

I ended up letting her stay home the rest of the day. I just couldn’t muster up enough momminess to encourage her to go back. I’m sad for her, but in this numb kind of way where I seem paralyzed to do much to help.

I realize this post is a big downer, but if I’m being truthful, these days are just as much a part of the journey as the celebratory ones or the tragically sad ones. In between are these numb ones where caring about all of this seems like a lot to ask. Leukemia is an exhausting disease that could wear anyone down. I know we will make it to the end; even on a day like today I have no doubt of that. I know we are strong enough to endure. But, I also know that there will be battle scars that never heal as a result. For all of us. And some days, I mourn those scars and question why this had to happen at all.

Love,
Beth

Big News

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October 26, 2010

Some exciting news has come our way this week… Tanner has been named the 2011 “Girl of the Year” for the Tennesee Chapter of the Leukemia and Lymphoma Society!!! What an honor! We’re so proud of her.

What does this mean? It means that the 14 or so candidates for Man of the Year and Woman of the Year will be raising funds in honor of Tanner and the Boy of the Year, Jack Woods. The kids will be LLS ambassadors at parties and events for the fund-raising campaign and even appear in ads. Tanner positively lit up when I asked her if she wanted to do it. Her duties will begin sometime in January and end in June.

Thank you all for supporting her during the Light the Night walk. Our unprecedented success as a “friends and family” team definitely played a huge role in Tanner receiving this honor.

Another piece of news is that I am starting my low iodine diet Thursday in preparation for receiving a radioactive iodine treatment in a few weeks… ugghhh. This radiation treatment is a pill that I take at the hospital and then I can’t be around anyone for five days (and the kids for eight days) while my body is ridding itself of the excess radiation. The iodine is absorbed into any remaining thyroid tissue, along with the radiation, and the idea is that it kills any remaining thyroid tissue, hopefully decreasing the chance of cancer recurrence. Thyroid cancer can recur at any time, even 20 or 30 years later, so I will be tested every year for the rest of my life, essentially. I’m actually relieved that they recommended the radiation… I just want to get rid of this stuff.

Once again, John will have to do it all… work, take care of the house and take care of the kids. I feel so helpless that he will have to do all this… again. I know I have said it before, but I will say it again… cancer sucks.

The low iodine diet is interesting. Since most salt we use in the U.S. is iodized, almost all processed foods are prohibited. No soy, dairy, seafood of any kind, etc. It made for an interesting shopping trip. Thank God for my friend, Beth. She spent all day yesterday baking bread, rolls, muffins and crackers for me from the thyroid cancer cookbook so that I wouldn’t have to survive without carbs for the next two weeks. Who has friends like this? I figure with bread and salt-free natural peanut butter, anyone can make it.

We’ve had a good week so far. Tanner’s energy seems to be back full force and she and Jake are amped for Halloween. Next week, she has a lumbar puncture with chemo injection, so that is looming over our heads, but we are trying not to think about it too much.

Tanner’s school is doing “Pennies for Patients” again in her honor. It’s a LLS fund-raising campaign where kids bring in change from home to benefit LLS. Moore Elementary continues to support our family in ways we never imagined.

I’m going to relish my last day of processed food tomorrow. I’ll miss pizza most, but diet coke is allowed, so I’ll make it!

Love,
Beth

Clinic Day #41

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October 6, 2010

Seems like I’ll never really understand counts. Tanner’s neutraphils were at 1,100 today, which is the low side of where they want them (1,000 to 1,500). But, her monocytes were very strong and they eventually become neutraphils, so they assumed she was about to go up to about 1,300. So they raised her chemo. Huh?

I’m going to be surprised if this little chemo bump doesn’t mean Tanner has to be pulled out of school for a month. Her counts do not recover quickly these days. It will be a devastating set back for her if it happens.

All her other counts looked great. Her hemoglobin and red counts have been very strong lately, which equals lots of energy and means she has been feeling pretty good.

The Tennessean ran a very cool article on Tanner’s lemonade stands today. Tanner took a copy into school to show her classmates. I’m hoping it results in more donations to Team Tanner. Click here to see a copy of the article LLS_Tennessean_Oct. 6

Light the Night is tomorrow night. We are ready!

Love,
Beth